ERN RARE-LIVER Workshop on Quality of Life in Warsaw

The ERN RARE-LIVER Quality of Life (QoL) Workshop in Warsaw will bring together international experts to advance PSC-specific approaches to quality of life assessment in research and care.

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This workshop, funded by ERN RARE-LIVER and organised by the Medical University of Warsaw, will take place on 18–19 September 2025 at the Library of the Medical University of Warsaw, Poland.

Although QoL is recognised as a crucial aspect of patient-centered hepatology, there is currently no validated tool tailored specifically to Primary Sclerosing Cholangitis (PSC). This workshop brings together key stakeholders to address this gap and facilitate structured collaboration in tool development, regulatory alignment, and effective implementation in both research and clinical care.

The workshop will be co-led by Dr Maciej Janik and Professor Piotr Milkiewicz (Medical University of Warsaw), Professor Douglas Thorburn (Royal Free Hospital London / UCL Institute for Liver and Digestive Health), Professor Shivani Sharma (Aston University, Birmingham), and coordinated by Ryan James (University of Hertfordshire, UK). This activity supports the systematic development of PSC-specific patient-reported outcome measures to inform future research and improve care delivery.

Further details are available on the event website.